Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

GUIDE FOR RELATIVES & SIGNIFICANT OTHERS

If you are a spouse, friend or family member of a Fibromyalgia patient, YOU may need just as much help as they do. In fact, you could need more. There 'isn't much written or said about partners or friends of Fibromites these days and it is quite unfair. When a loved one has a chronic illness, everyone around them is affected. It changes the dynamics of the home, workplace or wherever this person is as they try to regain their health. People have mixed feelings about how to act and what to do or say in these situations. There is no map for the well spouse or friend to follow.

The most confusing things to you are probably, "How can anyone be in some level of pain all the time? How can he/she be tired so much? Why is all this medicine necessary? What happened to my lively companion? How long will this last? How do I get him/her lively personality back? Will I ever get the person I love back?"

These are valid questions. To understand and help, you need to read all the Support Group manuals, newsletters and books available. Go with him/her to support meetings and doctor appointments. Learn all that can be done for improvement so "she" (or he) will progress easier and faster. Sometimes you may understand more than your partner about what really needs to be done. Aggressively sustain efforts towards symptom control. As the primary care doctor works on restful sleep and getting all systems back in balance, ask about pain-management - whether the primary wants to do it or use a specialist. Dragging things out with appointments every month or two will bring great frustration. If he/she isn't becoming more comfortable in a week or two, it's okay to call about another appointment or adjusting medications.

The right combination of medications and treatments never comes in the first visit. Each person is different and requires extended care to become more level. You are presenting the physician with a mystery to unravel so the closer you work together, the better. Your objective is to not just seek relief, but also healing and true improvement. After years of over activity and unrefreshed sleep, the FM person's bodily functions in many areas are damaged and require proper rest and time to heal. Within the first year, this can greatly improve, the pain level can drop and your loved one can slowly begin stretching/walking/water therapy and other activities to strengthen his/her bodies.

With even moderate symptom control, you might see proud signs of improvement in his/her smile and enthusiasm. Of course, the beginning will not be all smiles. It may be very difficult for both of you until treatment starts working. As the "manager" you can keep track of what medications didn't work so you won't lose time repeating them. Also monitor allergies or negative reactions. It would be very helpful for you to keep a small notebook logging in what is taken and the time of day to help evaluate how they affect your friend/spouse. This is a wise practice to continue so there is never doubt about what was taken when - otherwise you risk over or under taking medications. Either over sight can cause problems.

Expect changes in your home life to be part of this process. It's not much different than living with a diabetic, caring for someone with a broken leg or recovering from a serious surgery. Your friend needs help in recovering and becoming functional again. The only difference is that this condition is chronic and some of the lifestyle changes taking place may be permanent. Organizing things differently is a small price to pay for regaining the health and pleasure of being with the person you love again.

Some things will have to change to keep your partner doing well after adjusting to FM. The first thing to handle is reorganization of the physical jobs at home or work, shopping, cooking, laundry and even entertaining at home. Emotionally an FM person will want to maintain the same standards. However, it must be done differently through assigning tasks to other family members or bringing in help. A hard day of cleaning or housework can set an FM person back tremendously! By lightening the physical load of vacuuming or scrubbing, he/she can retain enough strength to be an enjoyable companion again. Your pleasant relationship and fun times together are far more important than any household chore! They will learn their limits quickly and know when to stop. Pacing activity and using energy wisely allows them to maintain physical and emotional stability. Like a bank account, they have a certain amount to work with and must spend it wisely. Before going out, give them the chance to rest for a half hour so they can last longer having time with you. Also, realize that mornings are not always the best time of day for an FM person. Some need a couple hours to feel "human" and face the world! Planning activities ahead will be a great help.

Anticipate that both of you will have "off days" when you just don't feel like dealing with FM and he/she may not feel very sociable either. You are both coping with lifestyle changes that are difficult. The well spouse or friend can suffer just as seriously as the FM patient. Both are experiencing a sense of loss for the way things used to be and grieving for these losses. This natural emotional reaction can be expected and dealt with through truthful talking or counseling. Honest communication lines must stay open to survive this transition period. Realistically neither party can "fix" the other and this should not be expected. BOTH really need to be heard and understood. There is a small inexpensive book available called, The Grief Recovery Handbook by John W. James and Russell Friedman. It is very helpful to couples dealing with any problem because it explains the process of working through life problems involving change or loss.

Another helpful practice is to "forgive, forgive, and forgive". Under stress, we all say and do things we don't mean. Sometimes it's easier to realize you are both struggling and to not have such high expectations of one another. Then when something goes right, it is greatly appreciated. Also, do not let the label of FM define your personality. Focus on who you really are inside, the people you love and living as fully as possible

A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...

I have my maxed amount of epidural shots of my cervical DDD....(and no one cares about my lumbar DDD)..... I've done physical therapy, muscle relaxers, Amitriptyline, Nortryptiline, desipramine.....narcotics... So I decided to go to a spine specialist and they have me on Gabapentin. Its been two weeks and it did nothing for my lumbar ever... but it did seem to help my cervical and arm/hand pain...

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